Anti tnf drugs and links with lymphoma / cancer

Mormodook

I'm researching anti TNF just now to see if its the path I want to take. I have been shocked to read tonight that taking Humira or Enbrel raises your chances of developing certain cancers. You can get skin cancers which seem relatively easy to treat if caught soon enough but the huge bomb shell was the fact we are at a greater risk of developing a rare form of lymphoma which by all accounts appears incurable. With this being a relatively new treatment are we playing Russian roulette or are we sitting on a time bomb ?

What conclusions have everyone else come to about this treatment. I'm being assessed for it right now and I've lots of thinking to do !

I'm not sure I'm ready to take the plunge - pain or not !

dreamdaisy

These drugs are very new and not a great deal is known about their long-term risks. I have been taking humira for four years and my view was this: something will get you in the end (it always does), I could get some form of cancer anyway (like arthritis cancer is not selective) and I knew from experience that the constant monitoring is there for a reason; Enbrel tried to explode my liver and I had no idea because I felt OK. These drugs are also thought to maybe reduce one's life-expectancy but, to be honest, that is no big deal for me. I face perhaps another twenty or so years of this, I am thankful it's not another thirty or more.

We face Hobson's Choice again and again and again. All we can do is make our decision and deal with the consequences. Sometimes those consequences are worth it because they include better health, mobility and less pain - I'm still waiting for that! DD

mig

I've been on humira for 16 months now and it was the best decision I made for me,before I started it I could barely walk as my feet hurt so much if I went out one day for the next three or four days I was house bound with my feet up,it hasn't stopped the arthritis but it has slowed it down dramatically so now I can live a near normal life ,I spent many a sleepless night before i reached the decision to try it,is it going to work for me for the rest of my life I don't know but for the present it has changed my life,this is a decision only you can make and I wish you good luck. Mig

stickywicket

It's good that you're doing your research, mormodook. It always amazes me when people grumble because they have to try DMARDS before anti-tnfs. All the meds for auto-immune forms of arthritis are necessarily powerful and all can have serious consequences but, as DD says, the anti-tnfs are newer so less is known about long-term use. If I ever need to take them I shall because the consequences of long-term RA aren't brilliant either. Talk it over with your rheumatologist, mormodook but also read the leaflets in every med you currently take. You may be surprised at some of the potential side-effects. There's no such thing as risk-free.

Mormodook

Thank you for your support everyone. It is such a hard choice and talking to people who have experienced this decision is so crucial .I have to agree something will get you eventually anyway ! I suppose you'd never step outside your front door as there must be a percentage risk of getting knocked down etc ....
I also wonder how "bad" your arthritis has to be to justify to yourself going on it. Maybe one day I will be the person saying "yes , go for it" .....
Again thanks everyone - I hate bringing such a doom and gloom topic to the forum as I'm actually an optomistic type of person !

barbara12

Its always good to do your homework, but also can put you off taking the drugs...suppose you have to weigh up the pros and cons..I don't envy you but do wish you well with whatever you decide.

marrianne

To Mormodookco
s she posted the question and everyone ,understanding its a sad time loss of a good friend and another strugglng with such problems ,I have felt unable to post any pain stuff re me ,probably silly because we all help and care for one another on here ,and all input is valued ,Pretty much at the same crossroads as Mormodook 22nd Jan going to be acessed for for CIMZIA ..OR its tongue twisting name Cetolizumab pegol ...apparently my R/A FACTORS ARE sky high after 2 years leflunomide B/P like wise the leaflet is short dwelling mainly on the negatives And I am also wondering how I will cope injecting 400 mg s into myself every 2 weeks 3 times ...starting dose ...filled a measuring jug with water and it looks like an awful lot ..The long term re the cancers I feel so poorly at the moment I just think a few pain free or pain dulled years would be so wonderful I wont think about cancer ...BUT if I were younger is that you Mormodook ? then I would research everything ((()))) to all Marrianne

dreamdaisy

Don't wait until you are too bad to gain any true benefit. I was offered it far too late so, unlike those who are on the biologics and don't post anymore because they are out there living life, I'm not so I am. DD

marrianne

DD.You make an excellent and brave point ,Perhaps I to am in the same position as you .Marmamook I am sorry your name bamboozles me today but I have to say after 20 years going round the houses I am no further forward apart from haveing a lot of dammaged joints .. I believe the bio/log are about as good as it gets but always looking out for new things ..Marrianne .

thistlegirl

I have hesitated posting here but here goes......
I have a type of lymphoma that was discovered 5 months after starting orencia. All is going well treatment wise so fingers crossed all should be fine.
My rhumy and cancer docs have both said they don't like consequences ans the timing of starting the drug and lumps appearing is too close for comfort. But......
I have been on 3 other biologics, anti tnf meds in the past 12 years and this is the first problem.
Would I go on another biologic againmof offered? Yes because the benifits were amazing.
Apparently my cancer history means that I am now banned from most of the biologics but the doc did mention one that I could try if needed- need to wait for the all clear first.

I have juvenile rheumatoid arthritis, I am in my mid 30s and was diagnosed as a baby. I have worked though most medications though my life and the best results have been the anti tnf and biologic ones.
I find that it is a balance between quality of life and the side effects of the meds and these drugs worked on my joints and didn't attack my liver or stomach like the other meds.

Hope this helps

Jenny

dreamdaisy

Hello Marianne, it's nice to see your name on here again. I do the 40mgs stuff every fortnight with the humira - I am wondering if you measured out 40 mls I'm no metrics expert but I think there is a difference between milligrams and millilitres. DD

marrianne

DD ,Thankyou for your welcome and for getting back about the dose ,Well on checking my pyrex jug ..Your right liquid mls totally different :oops: I feel daft but very relieved The Cimzia is deffinatelY ...200 mg much less We can do this based on the daily anti coagulant injections after knee replacement .Jenny and very good luck with your new Anti tnf .. your experience has given such encouragement to Marrianne x

exasperatedontaste

Hi Mormodok, I'm pretty new to this forum after stumbling across it over the Xmas period but I've suffered from psoriatic arthritis for 5 years now. I first tried sulfasalazine, then another I cannot remember then methotrexate for a year and then finally was offered humira. By this stage my left knee had been swollen to twice its normal size for a year, my left arm could not been straightened fully as the arthritis was attacking the elbow join so badly and I was starting to struggle to type as my knuckles were starting to flare savagely. So at the age of 27 I was facing the real possibility of losing the ability to walk, I could not carry even a light shopping bag in my left hand and I was going to have to quit my job if I couldn't type. I am only 27 so like yourself I was worried about the long long term affects as it is such a new drug. My doctor told me that they have to be tested for many years before they are released to the public but ackowledge that it would lower my life expectancy and increase my risk of cancer.
I have been on humira now for a year maybe and it was the best thing I have ever done. I am no longer in pain, I can exercise again (after barely being able to walk I can now work out for an hour in the gym or pool). My quality of life has increased massively. I get the odd flare where I cannot move my left hand if my stress levels are super high but I'm actively trying to reduce them at all times. I still suffer with fatigue really badly - worse than I did previously pre humira - yet at the same time I might be focusing on that more as I am no longer in pain.
However drugs work differently for different people. Yet if I had waited to go on it my knee and arm would have for so bad that it would have been too late to fix them. The early you try aggressive treatment for the arthritis the better the chances of recovery (my opinion not a doctors I might add!).
Happy to answer more questions on Humira if you want. Think you have to have arthritis in at least 5 or 6 joints to qualify for it as well by the way but can't fully remember sorry!

As5567

This type of thing has always been a concern to me and probably everyone else who takes these drugs, but what I always ask myself is this. Do I want to be stuck in bed 24 hours a day 7 days a week being unable to care for myself in my 20's? Or is it worth to take the risk and be able to live some what of a "normal" life.

From what I understand, before these types of drugs are even allowed to be tested on humans they need to undergo a very strict course of testing on who knows what, yes the long term side effects are unknown but that's the same for many drugs out there. Just look at paracetamol scares in the news recently, that has been a shocker to many people.

My view is that if they were really that unsafe, then the doctors simply wouldn't prescribe these medications for a disease such as Arthritis.

Mormodook

It's so good that people can share their honest options on here. Although in in pain I'm lucky that I am able to work full time but it seems like all the arthritis support group meet during the day so this forum is great. I'm 42 and have had RA since I was 27. So that's about 15 1/2 years . Here is a more positive question ...... If the tnf works can people actually do " normal " stuff again like playing sports , I loved badminton and never dreamed I would ever get a chance to run about a court again!

I really do appreciate everyone's support

As5567

Mormodook wrote:

It's so good that people can share their honest options on here. Although in in pain I'm lucky that I am able to work full time but it seems like all the arthritis support group meet during the day so this forum is great. I'm 42 and have had RA since I was 27. So that's about 15 1/2 years . Here is a more positive question ...... If the tnf works can people actually do " normal " stuff again like playing sports , I loved badminton and never dreamed I would ever get a chance to run about a court again!

I really do appreciate everyone's support

That's very hard question to answer and I'm sure it will be very different for everyone. But when I was in my teens my first TNF (Enbrel) more or less gave me 0 arthritis symptoms for a while and I was able to lead a 100% normal and active life. But now that I'm older and the disease has progressed I know that no drug is going to take away the pain and limitations that are there from the damage caused to my spine and joints.